The decoding of the human genome is one of the most significant advances
in scientific history and is set to revolutionise medicine and the
prevention of illness but some fear it will also expose a genetic
underclass – those who are disadvantaged by the genes they have inherited.
The breakthrough means that around 97 per cent of the human genome has now
been mapped, with most of the code accurately sequenced, and this is
expected to be fully complete in three years. Scientists will use the data
to search for genes – the templates that cells use to make proteins. These
are the molecules that build and maintain the body and when they do not
work properly they cause disease.
The potential benefits of this breakthrough are huge and include:
Genetic screening. A sample of blood can be taken and used to predict
inherited diseases. For example, many cancers are influenced by genetic
factors, so the information would allow patients to be warned about the
likelihood of developing a medical condition.
New drugs. The new genetic information will allow the creation of drugs
tailor-made to prevent side effects common to certain groups of people. It
will also allow drug companies to make more effective drugs which target
the specific parts of our biology that cause disease.
Gene therapy. This involves replacing defective genes with heal-thy genes.
Germline engineering. This is the most extreme method and involves editing
the DNA passed from one generation to another. Any abnormal genes would be
found in the egg or sperm and corrected or replaced to prevent the
disease-carrying genes being inherited.
It has always been possible to predict possible predisposition to illness
using a family's medical history. It is possible to study family history in
the same way as underwriters do for life, critical-illness, permanent
health and long-term care cover. While this is not purely genetic, it gives
a good indication of the effect of a family's shared lifestyle and attitude
The benefits to humanity of the genome project are clear but they will not
come without controversy. One of the most significant questions is how will
the information supplied through genetic testing be used? In theory,
insurers will be able to use the information to predict the likelihood of
their customers developing certain illnesses. What impact will that have on
policies and premiums?
In 1998, the Government established the genetics and insurance committee
on the recommendation of the human genetics advisory committee. GAIC's role
was to evaluate reliability of genetic tests and their relevance to
particular types of insurance.
To date, the GAIC has authorised the use of only one test, for
Huntington's disease, when assessing applications for life insurance
policies. In the last year, the Human Genetics Commission, the successor of
the HGAC, has been reviewing the wider social and ethical implications of
the use of genetic information on insurance. Last month, the Commons select
committee on science and technology published a report on the same issue.
The HGC has also recently recommended a three-year moratorium on the use
of genetic tests for insurance purposes.
The ABI voluntary code of practice on genetic testing states that for
medical insurance, the results of genetic tests should not be taken into
account. Bupa does not require customers of its private medical insurance
business to take genetic tests as a condition of being insured. Nor do we
require customers to disclose the results of tests they may have had. Bupa
currently has no intention of changing its policy.
At the moment, genetic tests are only really available through the NHS and
the test results find their way onto medical records which could be used by
insurers. However, it is also possible to use over-the-counter or
internet-based testing methods, which do the same thing. However, the
results are known only to the individual and may never find their way onto
medical records, therefore they will not be known by insurers.
The existence of these tests could result in adverse selection. Adverse
selection occurs when the distribution of risk in a pool of insured people
is skewed unfairly. This happens where people apply for insurance schemes
knowing they have “bad genes” and, therefore, a predisposition to ill
health. This could result in an increase in increased premiums, the cost
for which would be carried by “honest” applicants who subsidise the
treatment of people with a predisposition to ill health.
Genetic test results can have a profound and life-altering effect on the
individual. The results could tell them that they have a high chance of
developing a killer disease such as cancer or heart disease. How would
someone react to that news? Whatever the test results, people need
professional counselling to understand its context and implications.
The cost implications of additional genetic counselling is a debate which
insurers need to have with geneticists. The potential costs, particularly
with the current pressures on PMI prices, should temper any rush to the
incorporation of voluntary tests in underwriting.
There will also be issues around medical advisers for health insurers
using this new and complex form of technology. How do insurers gear
themselves up to be able to use it?
It may involve significant training and education for medical and
underwriting staff or it may require restructuring across the industry so
that applications can be handled consistently and fairly.
The health insurance market will need to watch and evolve in relation to
the reliability of genetic tests. Some might argue that the breakthrough in
the genome project will help reduce premiums because it will produce new
treatments for conditions and therefore reduce claims. Others might say
that the very existence of these new and potentially expensive treatments
will push up premiums to cover the cost of customers making use of them.
Whatever the outcome, it will be a long time before important genetic
predictions of common causes of adult death will be available.